Shannon Meyerkort, writer

Keeping Mum

October 15th is the International Day of Pregnancy and Infant Loss Remembrance. In honour of all the mums and dads out there with heavy hearts tomorrow and every day, I am publishing two pieces, written a while ago, but always relevant.

They’re neither short reads nor easy reads. I wrote them with loved ones in mind.

Keeping Mum

By Shannon Meyerkort

It’s the opposite of childbirth. The antithesis of joy. It is the absence of friends and family. It is packing away the never-worn baby clothes. It’s the mental readjustment of what is going to be, into what could have been.

Instead, it’s the silence, the stillness that comes with the loss of a baby. The unspoken congratulations. The ungiven gifts. The empty photo albums. Miscarriage, abortion, still birth: the taboos around them are like invisible walls, trapping parents-not-to-be inside. Often we do not know how to speak of this pain, so grieving parents often suffer alone and in silence.

Yet miscarriage is surprisingly common. Statistics vary, but it is agreed that at least 20 per cent of all pregnancies end in a miscarriage. The older the mother, the higher that number creeps. For women over the age of 40, data suggest that one in two pregnancies will end in miscarriage.

Despite how common it is, when is the last time you heard people talking about it. Just when is the right time to tell friends, content with their own new babies, you have miscarried for the third time in a year? How do you tell family that the baby growing inside you is at high risk of massive genetic abnormalities and you might choose to abort rather than bring a sick child into the world? How do you face the faces of judgement?

I have been one of the lucky ones. Three straight forward pregnancies. Three beautiful daughters. I had heard sad stories about colleagues and friends of friends – sometimes the tales would border on urban myth. But these were people far removed from me; I had never looked a woman in the eye who had just lost a baby.

A conversation with a close friend about her fear and distress upon being told her 11 week old unborn baby might have genetic abnormalities was the first time I came close to this agonizing topic. For two weeks, she had kept the terrifying news to herself as she faced a battery of invasive and painful tests. She disconnected not only from the baby she might lose, but from her network of friends and family. She could not bear people knowing she might need to choose to abort the baby. So she told no one. She was completely alone at a time when she needed the most support.

It was a sad moment when I realised that my friend felt she could not share her grief for fear of being judged by those closest to her. Did she feel she did not have permission to burden others with her sorrow? But spend five minutes with almost any woman, chances are she has a story about a baby, a miscarriage, a lost dream. Some stories happened long ago, some are still taking place.

Then unexpectedly, I received a message via Facebook. Another close friend who was 12 weeks pregnant had been to her first scan. The baby had anencephaly. The baby’s brain had formed outside its skull, and there was nothing that could be done. My friend would need to undergo a termination. Just two days before we had all sat around the kitchen table, sharing brunch and happy stories about our children. There had been no shadow that day.

I deliberated for what felt like ages in front of the keyboard. I didn’t know how to respond. She had just been given the worst possible news, and the following week would be one of anxiety, uncertainty and the ultimate grief. How do you respond to news like that via Facebook? If she had been in front of me I would have hugged her. If she had been on the phone I would have cried and asked her if she wanted me to come round.

But now I was unsure what was expected of me. How do I know when she is ready to talk? Do I send flowers? A card? How do I not be the well-meaning but insensitive person who inadvertently makes thoughtless remarks at a time she is at her most sensitive?

Of course, it wasn’t just me who was struggling with what to say. The people experiencing this loss often don’t know when or how to tell their stories.

‘I kept my miscarriages quiet from my family,’ Julie told me from across my kitchen table. ‘My family, who I’m very close to. It’s like you are protecting your choices and your emotions.’ Julie was pregnant for nine months that year. Three different babies, each ending in a miscarriage.

‘I was doing all this without my family knowing, so I didn’t have anyone to call on. You don’t want to share it. This is my thing, and I didn’t want to be dealing with their emotions as well.’

It was a quiet Sunday morning. Still and silent except for the intermittent calls from the flocks of cockatoos and magpies inhabiting nearby parks. On the kitchen table, plates of untouched caramel slice reminded us of our weight loss goals. Julie and I had known each other for years, having met through a Mothers’ group when our eldest children were barely six weeks old. In the years since, seven of the nine Mums in our group had gone on to have a second baby, and she had experienced three miscarriages. I had vaguely known that she had one miscarriage, but it wasn’t something we had really discussed. ‘I didn’t keep it from you, but I wasn’t going to offer,’ she admitted.

I wondered whether we had all been too self-involved to notice that she was struggling, and Julie responded by asking when the right time would have been for her to mention her miscarriages – at the Christmas Party we held each year? At baby showers? ‘I didn’t want to rain on your parades when you were pregnant. You needed to be excited, I certainly would be if I were pregnant.’ So she remained quiet, and battled through her grief alone while watching us fall pregnant and have our babies with apparent ease.

Julie is undergoing this journey in the new millennium: there is more information available, and it is easier to access than ever before. Patients are no longer forced to keep quiet and not query their doctors. Unhappy with earlier medical consultations, she sought a second opinion. She became an active participant in her own care, and as such Julie’s story is still continuing. The doctors have since determined that the latest pregnancy was affected by the XX16 chromosome, one of the so-called ‘miscarriage genes’. She and her husband have therefore decided to go down the path of IVF and pre-genetic diagnosis.

‘Hopefully they will be able to find a good egg because there’s a chance that all of them have been chromosomally damaged now. They actually had to prepare me for that. We can go through all the IVF… and you might find all of them are damaged. In which case you either have to find an egg donor or you give up the whole desire to have another child.’

If Julie’s story had taken place 30 years ago, it probably would have had a very different ending. She certainly wouldn’t have been sitting across the table from a friend with a notepad and digital voice recorder. Her life could have been more like Anne’s, now a woman in her early 60s, with a story she never shared.

When Anne and her husband married at 24, they immediately started trying to conceive, but with no success. When she saw doctors Anne was repeatedly told to ‘relax and it would happen’. During her teenage years she’d had a number of operations to remove ovarian cysts and by the time she was 27 she was back in hospital for another seemingly routine operation.

‘When I woke up there was an enormous bunch of flowers from the surgeon, and we wondered what had happened.’ In spite of this, the doctor said the procedure had been straight forward, told them to keep trying with the fertility treatments and sent them on their way. It was only two years later, in a different city, with a different doctor that the truth finally became clear. She had been sterilised. Instead of removing the ovarian cyst, her fallopian tubes had been cut and there was no chance she could ever fall pregnant.

This happened in the 1970s, ‘when you never questioned your doctor’. As a result, she never made a complaint and never saw him again. After a few failed attempts to adopt a child, and early menopause in her late 30s brought about by the surgeries, she quietly gave up her desire to have children.

It was very much a silent point in time for Anne. She did not talk about her experiences: not with her husband, not with her family. Her friends were all getting pregnant and starting families. She never discussed her sadness with her sisters, one of whom adopted a child from Sri Lanka and then later fell pregnant anyway. Her other sister never had children, and to this day Anne is not sure why. It was not something that was talked about. Decisions about children, whether dictated by external forces or internal desires, were simply not discussed.

Again, I faced a grieving woman from across my kitchen table. Anne’s sorrow was palpable when she talked about watching her friends – including my mother – all becoming grandmothers, and how difficult it can be to see them with their grandkids. I told her she was always welcome to spend time with my children, and she smiled sadly when she said ‘it’s not the same thing.’

My kitchen table was becoming a depository for sad stories. Over cups of coffee and pieces of homemade slice, I sat with these women as they answered my questions bravely, were patient with my lack of focus, and remained stoic as my eyes were the ones that filled with tears. I needed a change of scenery, so I visited my friend Jane who happened to be an obstetrician, an IVF specialist and a mother.

‘How do you cope, having to tell women that their baby is dead?’ I asked.

‘That’s the really hard thing. I have to be able to grieve myself, because I’m a human… but you also have to say “I’m your doctor”. I can give them a hug but I can’t engage more than that because that’s not what they want. Well, they probably do want more than that, but that’s not what they need. You can acknowledge somebody’s grief and that’s really important, but you can’t become a part of it.’

‘Miscarriage is common but that doesn’t make it acceptable. One in five pregnancies ends in miscarriage,’ Jane explains. ‘Chances are you know someone who has had a miscarriage but they have never told you, because we don’t talk about it. They’re not easily spoken about. But just because they’re common doesn’t mean they should be dismissed. I tell my patients this was your baby, you should expect to grieve. It was going to have a birthday and an education and toys. Don’t dismiss it as a medical mishap, it’s a baby.’

I haven’t been taking notes because I have been so caught up in her words – and her super humanness. She carries more sad stories in her heart than I can even begin to imagine, and I feel for her the emotional weight of carrying these around. I am suddenly drawn back to the room. Jane is telling me about the small fabric hearts the volunteers at King Edward Memorial Hospital in Perth make for the women who have experienced miscarriage. ‘They symbolise that we recognised that it was an important and memorable event, and gave it some recognition. The fabric hearts are something tangible…’

It is the day after my friend has had the termination. She calls to say thank you for the bonsai tree I sent to her. I had chosen it because I thought it represented the idea that the baby would still go on living in our hearts although it would not grow. She tells me that she and her husband were thinking of planting a lemon tree in memory of the baby. They didn’t know if it had been a boy or a girl, but they also wanted the lasting memorial, and liked the idea of being able to use the fruit in cooking, and sharing this food with friends and family around their kitchen table for many years to come.

After I hang up I reflect on what I have learned over the past few weeks. I still don’t have any answers about what is the best way to approach people who have been affected by this kind of grief, but perhaps that is because there is no right or wrong way. Every situation is different just as each of us are different. The point though, is that we should step up and make that effort. Reach out with our hearts and our arms, our words if we possibly can. Ask the question ‘how are you?’ and let the stories unfold.

*Names have been changed

USEFUL CONTACTS

Stillbirth and Neonatal Death Supportsandsvic.org.au 1300 072 637 A self-help support group for Victoria and Tasmania for those who have experienced the loss of a pregnancy or newborn

Perinatal Loss Service Run out of King Edward Memorial Hospital 9340 2222